Feb 23, 2013 - 8:08 pm
I was thinking about this subject for a few days now but reading of jane283 dad's recurrence and then steved reminded me of his 7 recurrence.
i guess my one year recurrence post surgery is in a different category.
so at present all scans clear, tumour marker ca199 and cea all normal.
so per conventional i am NED, no treatment options offered, except sit back and get on with life.
in the alternative space my ctc count is dangerously high, also my tktl1 indicates tumours giving of this protien.
so i have a very real and measurable risk of recurrence. So relying on conventional definition is setting us up for recurrences.
briefly the therapies to manage this risk while building peak health is an aggreesive immunotherapy regime using removab, vogel embolisations of the areas the tumours used to live in, dendritic cell vaccine, and a massive supplement regime targetted at weaknesses in ctc's. my rgcc molecular test is guiding these strategies. all the tests are on the blog.
warning i have basically become alot more fanatical, so i basically only post here brief summaries and offer general support. see my blog for full details, but i have warned my conventional friends not to really go there because you will not like what you read, what i say and what i think is best for my survival.
so we have two definitions of ned, CNED and ANED for conventional and alternative. In my heart, any friends who get to NED in the conventional space, i feel are not NED until they have a ctc test and a count of 1 or 0, when the metastatic risk is then negligible. thats my target and understading.
to me, NO EVIDENCE OF DISEASE means what it says, it implies active disease, ctc's are active. so previously i have said i am NED, now i retract that statement, i will not ne NED until my CTC's <=1.
one caveat, i have a supplement strategy to stop these stem cells from being activated using mcp and sfn and many other supplements and life style therapies as well as the immunotherapies in case a small met starts. so the strategy is two pronged, reduce ctc's if possible, inactivate them, and keep on monitroing them and any tumour burden.
maybe this level of effort is required to stay NED in the presence of what was extensive peritoneal, liver and lung disease. now granted these cells are now residual disease.
but we all know it just takes one dam tumour cell, start a met and kill us. we have to fight fire with fire. i know its not fair using all these therapies against one or two tiny cells. well who said cancer was fair any way.
basically this is my staying ned plan, its developing day by day here. my disappointing second removab result, indicates just how blessed i have been to have such a good immune response initially. the take home message for all considering removab, is don't waste what be your only shot at cure, by doing these therapies half assed. give this stage of your recovery plan 1000% effort. sorry yes i am clearly advocating the obsessive approach.
if this post causes any heart ache forget it, and follow your doctors advice.
ps http://health.ucsd.edu/news/2011/Pages/11-14-new-target-tumors.aspx i have emailed them to see if i can get the drug